Dementia – a note for my children

Over heard telephone conversation between two of my sons.

” Mum has lost the tea she has just made.”

“Again – she’s becoming Nana.”

No I am not , I shout – or am I?

It get’s me thinking maybe I should compose a briefing for my children.

What to do if I get dementia?

Many years ago, when your Nana started getting confused you asked. “What do you want us to do if you get like this mummy?”

It’s a tough one. They watched me care for my mother with patience, love and humour and I would like to think it showed them the way. But they are not me.

 When I began what, I call ‘the journey’ with my mother when she was first diagnosed with dementia I made an important decision – do it with good grace and celebrate the good bits.  And there are quite a lot of good bits. For one thing, she forgot a lot of things that you used to make her angry particularly who she bore grudges with. And my mother was a big grudge bearer.

It was a journey not to the far-flung corners of the world, or something that I particularly looked forward to. It was an altogether different kind of trip, where I knew the road would be rocky, unpredictable, sometimes very painful, and    sadly not with a  happy ending. But while she was here and I was in charge, we were going to have a lot of laughs.  And that is the thing with dementia it is how you approach it that makes all the difference, especially in the early and middle stages. Admittedly towards the end it can get a bit grim. And in that case boys just give me the pills!!

My mother was 82 when she got dementia –  Vascular Dementia, which means the poor brain is isn’t getting enough oxygen – it is being attacked on all fronts and doesn’t stand a chance.  Dementia  is one of those few words, like ‘cancer’ or ‘coma’ that seems to carry a primeval power.  It doesn’t matter what advances have been made, what treatments there are nowadays; it conveys a finality, a definitiveness that instantly redefines life. It is horrible, irrevocable, and merciless.  I didn’t know how rapidly she would  deteriorate but I did know that we would travel the road together.  

We had become part of a growing statistic –  a new socio-demo-psycho-medico-political segment. Somewhere out there, a computer was whirring away and saying ‘Don’t send them holiday brochures anymore’.  And just when my children were almost grown up and becoming independent and I had thought that I was getting back my freedom – puff, just like that, I had to start parenting all over again, only this time for my mother.  I would be lying if I didn’t admit to you boys that there were some days when I had some very uncharitable thoughts as will you and that is ok.

My mum’s diagnosis was not a complete surprise. I had watched her memory begin to fade.  There were small things, almost funny at first; occasionally she would forget what day it was, or get lost while driving in familiar neighbourhoods, or forget names or words; all were things I noticed, but didn’t label. I invented excuses and put it down to ‘old age’.

But the diagnosis helped. I stopped  getting  frustrated and angry by what I thought was simply irrational and scatty behaviour. I now knew what was happening.  I called her; not once or twice a day like before but seven or eight times to remind her what is happening that day, to check that she is eating, to see if there have been any important letters and generally chat.  While before these calls made me feel stressed and anxious, I  began to  find them reassuring; she may be ‘slipping’, but for the most part she’s still there.

And we had a lot of laughter, and a new contentedness.  We joked about her forgetfulness and blamed Ginny, the family ghost, for losing things. And we giggled about the fact that she had forgotten many of the things that used to annoy her.  Mum used to have a memory like an elephant, and could hold a grudge; she would never forget nor fully forgive anything that we or anybody else had done wrong. Well now, the grudges are gone; she doesn’t remember them or the events, which created them. Last week she said, ‘I don’t think I like so and so’ and I when asked why, she laughed and said ‘I can’t remember.’

You boys were less fazed by the situation. You had spent a lot of time with your nana and although you were tough and abrasive with each other you were always   warm and sensitive with her. And while you noticed the changes it didn’t cause you any alarm. Of course, it will be different if it is me – your mother.  I remember after one visit to Granny’s house you asked, “Why does granny write messages and stick them on the door?” and when I told you that she couldn’t remember things and these were to remind her you just took it at face value.  

So, boys this too was part of my journey.  Not only was I engaged in the ultimate role reversal, not only did I have to watch my Mum’s decay and cry for her and my loss of her, but, if I am honest, there was an additional concern. Beyond my pain for my mother, I was also worried for myself.  Is this my future?

My memory has always been my downfall. I have put it down to being slightly dyslexic. My friends say having a conversation with me is like playing the panel game Don’t Say a Word. “You know who I mean, …. the man with the red hair and the big nose …. he has the squeaky voice….’. On a good day, I would laugh at myself.  On a bad day, I get frustrated and angry. Now I am terrified. Is my memory getting worse? Am I on this path too?

“Don’t worry” said one my boys  “by the time you get old they will have found a cure.”  That should be reassuring, but its not; I fear his flippant statement is neither true nor confidently said, and that deep down, they do have fears.

 And on bad days when I was alone I would feel a deep sense of loss.  The essence of my mother was still there, and much of the time she was not only quite lucid but she retained her wicked sense of humour.  But my best friend, who my mum had always been – the personality that was my Mum – was  starting to fade.

So, my dear children  my quest is to share the journey I made with my mother and there is no pressure for you to follow suit.  But if  there is any money left in the coffers rather than one of these soulless old age homes, use the money to keep me at home with a live in carer and a good supply of marijuana.  And when it gets bad  just dispose of me however you wish. Preferably  quick and mercifully.

“Let’s be careful out there”

Imagine how we would be if we were less afraid

What a difference the sunshine makes to one’s life. I am thankful today looking at a blue cloudless sky and crisp white snow on the ground. I am thankful that  I feel relatively healthy and I am thankful for an unexpected gift which  arrived last week from a friend – it was as if she knew  what was going through my head over and over again. The  book The Boy, the mole, the fox and the Horse (yes for some reason the  B and the H is a capital) is beautifully bound and illustrated. 

It almost felt like the author Charlie Mackesy  was also reading my thoughts and  had written this book just for me. Of course he had also written it for thousands of others because it’s the stuff we all know but don’t take notice of and sometimes  the simplicity of a book like this is a reminder to put these thoughts and emotions  on the top of our agenda and action them.

Yes, today I am in a philosophical mood.  

Apparently the idea for the book came about when  Mackesy  was chatting with a friend the explorer  Bear Grylls about what is meant by courage and what was the bravest thing  they’d  ever done.  Grylls is well known for his courage  but Mackesy said “the bravest thing I’d ever done was when I was struggling and had the courage to ask for help.” And so, he explained “I drew it.” I loved his illustrations that accompanied the words.

“I wonder if there a School of unlearning

“What do you think is the biggest waste of time? Comparing yourself to others

charlie mackesy on Twitter: "The biggest waste of time.… "

“Imagine how we would be if we were less afraid

and another that really resonated with me

 “Often the hardest person to forgive is ourselves

This is now part of my morning Yoga and meditations.  

Perhaps it is even more pertinent now as  I am in the last phase of my life and I do really want  to make it worthwhile because if not, well what is the point? I did warn you people that I was in a thoughtful mood today.  So, I dug out that wonderful poem My Soul Has a Hat.

 It goes:

I counted my years

and realised that I have

less time to live by

then I have lived so far

I feel like a child who won a pack of candies and at first ate them with pleasure

but when she realised that there was little left, she began to taste them intensely

etc etc

and ends with

……….We have two lives

and the second begins when you realise you only have one.

The poem is now pinned on my wall in front of my computer

Indischa Flower - After reading this beautiful poem,... | Facebook

Note to self:  It is time to stop ‘talking the talk’  Roma and begin ‘walking the walk’  (Think I might just have had this Note to self several times before)

“Let’s be careful out there”

Talking to spoons and a large penis

The spoons are not happy

All this television watching is clearly doing some good. This weekend I learnt that to ripen unripe avocados you put them in a container with a banana – who would have thought. And yes, it works. Within 48 hours my very hard avocados were nice and soft. Life has shrunk somewhat over the past 9 months!

And while I am on the domestic topic I have to revisit that old chestnut – housework.  Why? Because I am starting to feel  a bit of a failure.  All this time and I still don’t have an organised house.

Speaking with a girlfriend recently she remarked that her fridge had never been so organised and that her cupboards were – well beyond tidy. I didnt like to ask but I bet her knicker drawer was colour coded. I opened my cupboards and was ashamed. The condiments were a mess. I mean how many half filled oil bottles does one need. The cups were all higgledy piggledy on top of each other, and the cutlery drawer – remember back in the day when I used to talk to the spoons – well I still do and they are not amused.

“Come on girl get it together – just look at us.  We  have stray forks in our compartment, teaspoons mixed up with the soup spoons, ladles and wooden spoons  edging towards our space. And why is there a cork in here?”

Toddler Chores and My Silverware Drawer — KCKidsDoc

It’s called anthropomorphising   and apparently it is not that uncommon to give human characteristics to non-humans especially when you are starved of human contact. And let’s face it I have been in semi lock-down since the beginning of last March and  probably only seen about the same half dozen people in all this time,  so I guess it is no wonder that the inanimate objects  are getting more than their fair share of attention.  Look if Tom Hanks  can  anthropomorphise  his volleyball on his desert island I guess I am in good company.

But I do know that I could do better on the housekeeping front. According to Ideal Home Magazine there are 43 easy cleaning jobs to do while in lock down – for every room in the house.   

Clean inside and outside your kitchen cupboards, organise kitchen cupboards, wipe on top of kitchen units, deep clean the oven, sort and soap the cutlery draw, empty and clean the fridge, defrost the freezer, clean the kitchen drainer……

Actually, I am bored now.  Seriously there are another 36 jobs. This is a lost opportunity. When will I ever have all this time again?   And I am embarrassed to say that I still have 49,000 emails in my in box 23,000 unread. Wtf am I doing with my time? Yoga, Bridge and dog walking are all very well, but  I could also  have a very clean and organised house for the first time in my life.   

Big Note to Self: Get out of bed earlier

And now for something  completely different.  A children’s tv show in Denmark  about a man with a giant penis has caused fierce debate. Can’t think why! Apparently  the character uses his very large ‘member’  to hoist a flag, tame a lion and retrieve an oven from a lake.   I wonder if he uses it to clean his house as well.

John Dillermand: Children's TV show about man with with giant penis airs |

“Let’s be careful out there”

Those were the days…….

Who else felt uncomfortable watching the  BBC drama series The Serpent? It told the remarkable story of how one of the world’s most wanted men: thief fraudster, master of disguise and serial killer, Charles Sobhraj was brought to justice. The Serpent was shot across South East Asia and is set in the 1970’s Hippie Trail. Very well done but uneasy viewing.  I was a back packer back in the early 70’s. Trusting everyone and believing that no harm would ever befall me. I was invincible.   I too hitchhiked, accepted invitations from strangers, partied and  smoked marijuana.  And it never occurred to me that I might be in any danger.  I was having too much fun to even think about it.  Yes, I do remember escaping through a few bedroom windows, and hurrying away from overzealous hand-wondering men. 

The Serpent release date | BBC cast, plot and latest news - Radio Times

I remember when I was living in Spain with a bunch of international fellow back packers I had to hide in the bushes when we got raided by the police. Two of our group, a Canadian and a Brit got arrested and spent 5 years in a Spanish jail. I shudder now when I think of my behaviour. But I was 18, naive, a sort of  hippy  and in love with the world which I thought was also in love with me. 

Back then there were no mobile phones and letters took forever to reach home and who could afford to call home anyway. So, it would take weeks and months for reports of missing travellers to reach the authorities, mostly from their families who never got  correspondence back from their letters. I truly wish that I had made a few more phone calls and written more frequently. As a mother I can imagine how worried my parents must have been – I am so sorry mum and dad.

Obviously I survived and thankfully my 3 adult sons who all did the pack backing thing survived. I did though make them promise that they would send a weekly text to let me know where they were, threatening that if I didn’t hear from them I would contact Interpol.  I also made them all watch Midnight Express before they left.  

How different is this world right now from the early 70’s. Now I can only travel in my head. I conjure up far off places that I will visit when we are free. I am thinking that perhaps travel might be limited to the UK so I am planning a trip around some of the 200 odd islands on our coasts. To keep me sane I am researching the best ones and working out routes and logistics. Sadly I doubt those wonderful hedonistic years that I so enjoyed will be available to the current generation. Maybe after The Serpent it’s a good idea. A return to travel as it once was is probably an unattainable fantasy.

I know this is a somewhat selfish perspective the bigger picture for many economies  who are so dependent on tourism is catastrophic. Last year  the industry  suffered an estimated €3 trillion euros in losses on account of the pandemic. And  tens of millions of people have lost their jobs.  

Enough already  Felstein you are  in danger of getting stuck down a rabbit hole. My oh so wise Israeli cousin continually reminds me that I am becoming too much of a  ‘glass half empty’ person and what good is that – quite right too.  I just need her sitting  on my shoulder reminding me to focus on the positive. And on that note I am happy to report that I finally came top in Bridge.

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“Let’s be careful out there”   

A bit of rock does wonders

There is nothing like a blast of very loud rock music to put one in a good mood. This morning I woke up, watched the news and wondered if I would survive this pandemic and, in fact if  the human race would survive. Yes, I do realise that watching the news first thing in the morning is not recommended.  But it is a habit that I don’t seem to be able to break.  I am and always have  been a news junkie.

However after my  morning  yoga,  a  dog walk and breakfast I put on some very loud music  – thank you Spotify –  and while cleaning the kitchen danced around listening to Led Zeppelin Stairway to Heaven  and ignoring the confused  looks of my pets I sang along loudly.  Led, you were  just what I needed.  I fully recommend this as a pick me up.

Led Zeppelin's Stairway To Heaven copyright battle is finally over - BBC  News
Best band ever

As is my wont this survival thing usually crops up just as I am about to fall asleep.  And it’s when I start the ‘if I survive game’ and promise myself all sorts of stuff.  When we were children my brother and I used to play  the ‘if we win the pools game.’ We would spend endless hours deciding on who would get what. First on the list was a maiden aunt who lived in a bedsit with her mother  in a run-down tenement flat in Kilburn. We were horrified that the toilet was 3 floors down and had to be shared with the other tenants and the kitchen well a rather grubby gas ring was in the hallway outside the bedsit.  Of course, we didn’t do the pools, but mum did and every Friday the pools man would call to pick them up.  We never won. 

I also play this game with my premium bonds. When the email arrives  “congratulations you have won please check your account,”  despite knowing that it will just be £25 I always wait a few days so I can have  some time to fantasise what I would do if I got a big win. I also play the Lottery – and have done for 10 years and never won  anything.  I want to stop but it would be sods law that my numbers would come up.  It is odd though that I have never ever won anything.  That said I know I am one of the fortunate ones and for that I am very thankful.  However, a little win would be nice.  

So, what did you all do on New Year’s Eve? I was in bed at 9 with a book – a bit extreme I know.  Maybe I was making a point.

Premium Vector | Woman sleeping at night in her bed with open book

I did however have a little pang of envy as my close  friends gathered in  one of their homes to celebrate. Apparently it was a lot of fun.  They  have stopped inviting me  because they know I won’t come which is true,  and yes I do feel a bit left out and wonder just how much this will affect the previous closeness of our friendship. Hopefully it won’t.  I have questioned  whether  I am being  a tad over cautious as none  of them thankfully have got COVID  despite   being a lot more out and about than me.  So, am I the fool here? Have I been semi shielding since last March, for no good reason?  As hopefully a vaccine will soon be rolled out  I will not now cave in. However, the governments constant U turns over this virus gives me little confidence of the efficacy of dolling out a single vaccine.

Regarding friendships in the age of COVID19  it is almost as if we have to navigate  consent with our friends much like  the way we used to  with sexual relationships.   Talking of which sex that is,  have you seen the  Netflix period drama Bridgerton?   Regé-Jean Page plays the lead, drop dead gorgeous  and what a body.  The sex  scenes – really I think I must have missed out somewhere.  I binged watched  – and went to bed alone feeling a little forlorn. Certainly, a step up from   when Aidan Turner went topless in the BBC’s Poldark? Sadly,  I think those days are over for me  although I am not sure it was ever quite like Bridgerton. Maybe too much information.

Phoebe Dynevor and Regé-Jean Page Give Us All the Juicy Details From the  First Season of 'Bridgerton'
That’s him on the left

Digressed again  sorry I was talking about friendships and going to bed early with a book.  Interestingly  the book I was reading on the recommendation from a friend was The Price of Peace Money, Democracy, and the Life of the economist John Maynard Keynes. Not exactly the most uplifting New Year’s Eve read   but a very interesting  perspective from a century ago and still  very prevalent. After World War 1 he said, “The real danger was from those who rejected international harmony for national glory,” hmmm sound familiar?  I despair that we have learnt nothing from past events.

The Price of Peace: Money, Democracy, and the Life of John Maynard Keynes  eBook: Carter, Zachary D.: Kindle Store

So, I leave  you with the vitally important  and profound 2021 predictions of  Nicolas Aujul, who claims to see the future through visions; The royal family are apparently in for a rocky ride. There is  heartbreak for Kim Kardashian and  Megan Markle will reveal all.  Riveting news.  If only  my Granny Roth and her phrenology was still here.  

“Let’s be careful out there”